Elaine

Thanks for filling us in on you details. You've had a lot to deal with.
The unusual presentation of your symptoms must make for difficulties with comprehending what's likely to happen.

Are you still seeing the immunologist at Duke? It's good to have a physician that looks outside the box for possible answers and yours seems willing to do that. The Primary Immune Deficiency Disorder would be responsible for many of your organ symptoms - at least you're able to get IVIG to help manage those. I'm guessing you're aware of your susceptibility to infections etc. (something we share) and monitor that.

Going back to your first post and question on what is going on and what to expect with SFN - it would seem your SFN is secondary to the IDD - it's not uncommon for neuropathy to develop with immune disorders. As for what to expect - everyone is different - some have slow onset which progresses to chronic PN others have an acute onset which doesn't improve, and others will go into remission. A lot will depend on the cause, underlying conditions, degree of involvement etc.

You're already trying two of the most recommended treatments for (autoimmune) neuropathy ie: IVIG and gabapentin. Shaggychic's recommendation to extend the gabapentin doses makes sense - let us know how that goes for you.

Like you I'm also grateful I lived an extremely full life before the onset of illness and thanks to a basically pragmatic nature am learning to cope with multiple incurable conditions. You seem to be very capable at working out what you need to do to manage things (I vaguely remember your posts about sourcing the braces), and hopefully can do the same with the PN.